I was 16 years
old.
What do 16-year olds do? We drive. We hang out with our friends. We
go to concerts. We wreak havoc on our parent’s minds. We sleep late because we
are up late. We get in trouble. We have fun. We live to be free. Independent.
I was 16 years old.
What did I do? I drove to the doctor. My friends visited me after
surgery. I listen to Pandora on bed rest. I cause concern in my parents. I
sleep late because I was up late. I was up late because my medicine causes
insomnia. I have flares. I get fatigued. I hope to be without pain. I hope to
be a little independent.
Birthdays roll by…17…18…19...and here I am. This is a
list of things I often have to ask someone to help me do, that I used to be
able to do all by myself:
- Pick up anything heavier than a large bowl of cereal.
- Open a lid or cap of any kind.
- Pour myself a glass of milk, or water, or tea from a pitcher.
- Anything involving the use of nimble fingers.
- Zip up a dress.
- Use a clasp on a necklace.
- Braid my hair in the back.
- Grip anything larger than a shoebox.
- Reach something above my height (I can’t go on my tip toes).
- Open the childproof cap on my medications.
In two months, I
will be moving into the housing at the University of
Washington (an apartment). This means I will be completely in charge of any
chores, cooking, cleaning, shopping, and schoolwork that needs to be done. Yes,
I am wonderfully excited to grow up and get to be a “big girl.” Yet at the same
time I am fretting about living without my mom. She keeps me on track with my
disease; always making sure I am taking my meds, filling prescriptions, getting
injections delivered on time, scheduling appointments, making sure I have blood
work done, and making sure I make it to the appointments. It’s glorious (and
relieving) to know that she is there to take care of me, even though I usually
manage all those tasks on my own. I guess I am just reassured knowing that she
has my back in case I completely space something—she is my mom after all.
I didn’t realize
how dependent I was on the people around me until we really started to discuss
my moving away from home. Before college and my disease came up, I never
thought twice about living away from home. Now, with my disease in full swing I
admit that the thought of living even a few hours away from home is
nerve-racking. So many things can go wrong. I have to find a new pharmacy, new
doctors, and new resources in a place I am completely unfamiliar with. I am
hoping that the University of Washington medical center will provide some
assistance. At least I have a top-rated medical facility nearby.
I don’t like having to be dependent on others.
In fact a rather hate it—most people do. While I was on bed rest (twice) after
surgery, every little thing had to be done for me. Anything I needed or wanted
had to be brought to me because I couldn’t get up and walk. It was nice the
first couple days to having every need tended to, but then it just got
annoying, and I felt like I was annoying everyone with my needs. Some day in
the future I may be like that all the time. Completely dependent. If I can’t
get this disease controlled I could very easily end up with a walker, a
wheelchair, or worse. I don’t want to be the person who is completely broken at
age 35. I don’t want to become dependent before I even have a chance to be
independent. It is wonderful that I have so many people around me who are
willing to help. I am lucky, fortunate, and extremely appreciative for all they
have done and continue to do for me. However, at the same time I wish it didn’t
have to be like this. I wish I could do it all by myself, but I know that won’t
happen. Learning to accept someone’s help is unpredictably challenging. Having
to relinquish control is not something that comes natural. I am having to teach
myself that it is okay to request assistance, and isn’t something I should be
embarrassed by. For people with a disease like mine, there should be no shame
in needing the continuous support of people who love you.
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